Here is a Q&A with Robert Chapman, exploring his experiences as a thyroid patient and advocate.
Mary Shomon: Can you tell us about your thyroid diagnosis?
Robert Chapman:I was diagnosed in July of 2003. At that time, I was told it was hypothyroidism -- an underactive thyroid -- but I wasn't given any explanation about autoimmune disease. I didn't learn about that until years later. At that point, I was told, "you have an underactive thyroid, here are the tablets, come back periodically to be rechecked, and be on your merry way." They told me that things would get a whole lot better.
Mary Shomon: Were things better?
Robert Chapman:Unfortunately, not at all. From the start, they put me on 200 mcg of levothyroxine, on top of antidepressants, and for more than two years, I felt quite poorly-- mentally and physically -- while my blood tests said I was "normal."
Sleep was a big problem, and it got to where I didn't even want to go to bed. I couldn't sleep, so I would get up, go downstairs, have a cup of tea, and have another go at going back to sleep, sometimes three or four times a night. When I would sleep, I'd wake up disoriented, exhausted, and confused. The cumulative effect of the lack of sleep was that my 24-hour cycle got completely upended until I found myself going to bed in the middle of the day.
Mary Shomon: When did you to decide to start blogging about your own experiences?
Robert Chapman: At the end of 2005, as a result of doing some investigating, I first realized that I was on too high a dose of thyroid medicine -- I was significantly overmedicated. Getting information was like opening Pandora's box for me -- I started looking at websites like About.com, and online forums.
During that period from 2006 to 2010 I was observing, reading, and eventually, felt confident to contribute, especially in the community-oriented environment of Facebook. I eventually realized that I had a story to tell that could ultimately help other people, and knew it would be therapeutic for me to give some record of the ten years of my life that I'd lost, and even the years before that when I was deteriorating and not knowing what was happening to me.
By that point I'd built up an advocacy connection with you and asked you if you thought people might be interested in a blog, and you were supportive. So I launched the blog, and it was overwhelming almost immediately, with positive comments, and people have been complimentary and supportive.
I've had dark days, and dark years, but I started to learn that this is not what the rest of my life has in store for me-- there was a promise that things will get better. I saw a future, and what price can you put on that?
Mary Shomon: What surprised you about blogging and sharing your story?
Robert Chapman: What surprised me most was the positivity, the pats on the back. I hadn't heard those positive things for ten years -- I'd been a virtual recluse, and truly lost my thirties. People said it was courageous -- probably because the only way it works for me is to tell everything and not hold back the less savory aspects.
I've had people comment that they are going through the same thing, and it's refreshing for them -- and for me -- to see that others are going through the same experiences.
Mary Shomon: The majority of thyroid patients are women, but as a man blogging on a topic typically dominated by women, have you had feedback from men?
Robert Chapman:I mostly hear from women, but there have been a few men. They react almost like men in a pub, who say "good on ya fellow" -- almost a sense of brotherhood.
I hear from women that they get their guy to read it, to try to understand how his wife or girlfriend is struggling. I think when a guy sees it, they sometimes think, "hey, look, there's a bloke going through what I'm going through" -- and the guy reads a couple of posts and realizes the suffering is real.
Mary Shomon: What do you think of the fact that you have quite the fan club of women with thyroid problems from around the world?
Robert Chapman:It's lovely. I don't take it too seriously or getting carried away with myself, but at the same time, after years of the isolation, it's such a tonic to hear positive feedback, compliments, and such. I never get tired of hearing them. I enjoy it when people get me; I have a dry, self-deprecating sense of humor -- that was always my defense mechanism -- and am quite comfortable poking fun at myself. As an advocate, you don't have to be dry and medical -- it can be about emotions and feelings, and that's what spurs the interaction.
Mary Shomon: For Thyroid Awareness Month in January of 2011, you contributed a video for the "I Am the Face of Thyroid Disease" campaign. The video ended up becoming the most popular thyroid awareness video that year. Can you share some more about how that video came to be?
Robert Chapman: My blog was only six months old, and while I felt painfully shy about it, I wanted to show that I was willing to help out in the thyroid advocacy area, and repay the faith others had shown me and my new blog. I had an old beat up laptop and it wouldn't record sound, so I had a hang-up about my voice and accent. So I remembered Bob Dylan's video for his song "Subterranean Homesick Blues," and I decided to use a similar approach. I wrote up my feelings on cards, and gave it a go, sitting there quite sheepishly in front of the camera, on my own. I almost had stage fright to do it. I held up each card -- one at a time. (I still have them!)
When you saw it, you said it reminded you of a scene in the film "Love Actually," and you added a piece of music from that film -- and it's a lovely piece of music that doesn't drown out the writing, it enhances the message. It was like serendipity. And so we named the video "Thyroid, Actually."
It had the most powerful response of anything that I've done -- it just fit -- where I was at, in my journey, wanting to help. I didn't know this was going to be so popular video. There was not a single negative comment, only lots of positive comments, people saying they were moved to tears. Crikey, I didn't realize that what I was doing would do that. It was fantastic, I'm proud of it now-- and it'll be out there forever.
Mary Shomon: What's down the road for Hypoman?
Robert Chapman:I'm still a long way from being what I consider to be well. I'm still struggling with unrefreshing sleep and brain fog. It's like groundhog day every day --I'm just getting warmed up and all the ideas are starting to flow, and it's time for bed.
I've faced so much negativity from health care professionals, they've made me doubt myself so much, that when I come through the other side, I want advocacy to be a part of my life. I'll know I was right to have researched, to have asked questions, and I want to help validate all of us who have shared our stories... that's what I can give back.
Maybe when my mental function is optimal and I feel like my writing is improving, there will even be a Hypoman book. It doesn't have to be a masterpiece, and even if it's given away in clinics, it would an accomplishment. But the key thing is that it would have to be honest. I won't sugarcoat anything -- it will have to be me.
One thing I know -- when I am better, and when I have a clearer head, I will pursue my dreams. I am looking forward -- I do believe my best days are in front of me. I strongly believe that. And then who knows!
Connect with Robert Chapman / HypoMan